Archives for April 2003

At the Genes and Society Festival, Harry Griffin, Acting Director of the Roslin Institute, reflected on the scientific significance of Dolly the sheep. In a follow-up interview, I asked him whether he thought she had any cultural significance.

With the creation of Dolly,the Roslin Institute succeeded, in the first successful application of nuclear transfer, to produce a clone from the cells of an adult mammal. Griffin said she had become an ‘icon in the biotech industry’, the subject of numerous theses, and a backdrop to discussions on genetics. I suggested that perhaps the media’s hysterical reaction to the Dolly episode reflected a broader trend in society. Did he have any thoughts on the source of the anxiety and mistrust in GM technologies being expressed? He responded that the ‘vested interests’ on both sides of the debate feed an opportunistic news agenda.

For some, ‘the future is not to their liking’ and rather than recognising today as the best time to have lived, they’re inclined to hold the view that we are ‘heading for the dog house’. Griffin thinks the hysteria around the application of biotechnology, and transgencic animals, has become a lightning rod for these kinds of attitudes and personalities. But why, he asked, is it being singled out for attention as a vehicle by the misguided trying to ‘right the world’s wrongs’?

Griffin described a ‘law of diminishing returns’ where the pervasive benefits are not as likely to be as great or as visible, as the introduction of the Pill for example. The major risk factors associated with heart disease and strokes were as susceptible to changes in lifestyles, as the application of genetic technologies. There are ‘serious ethical issues’ that need to be addressed rather than focusing on ‘imaginary things in the dim and distant future’. Why are we spending so much money on acute medicine when it would be better directed at preventative health? Griffin answered his own question, arguing that the statistical benefit of such an approach is overlooked because tugging at the ‘heartstrings [is] far more persuasive’. Although I agree there is no place for sentimentality in medicine, his enthusiasm for the new public health was rather perverse given his credentials as an ambassador for the potentials of biotechnology.

During his talk at the festival, Griffin spoke about cloning and how it resonates with people’s fragile sense of their identity. He referred to a need to ‘examine our view of uniqueness’. I asked him to elaborate on what he meant by this. Cloning is a strong theme in science fiction literature, he said; the clone is seen as somehow ‘sub-human’. He elaborated on this with the analogy of a painting by an Old Master – the original is worth a fortune, but an exact copy is relatively worthless. We are far more than our genes. They determine predispositions rather than providing certainty or determining our fates. Despite this, the perception that cloning is a threat to our uniqueness as individuals persists. Griffin speculated that this might disappear with time. Wishful thinking, perhaps.

A member of the audience, during his talk, questioned why scientists weren’t setting the agenda rather than reacting to it. I asked Griffin whether there is a reluctance by the scientific community to defend their work in unapologetic terms. On the contrary, he asserted, scientists do defend their work. The UK’s scientific community is comfortable with their need to ‘engage’ with the public. They provide the facts, and society weighs up the pros and cons.

Griffin rightly argued that science is neutral. But scientists can’t afford to be neutral when it comes to defending their work. There is a danger in leaving the so-called ‘ethical’ debates to run their course. In the absence of a robust case for each and every breakthrough, the free-floating and ever present anxiety, will irresistibly attach itself, regardless of the merits. This can only reinforce the sense that scientists are pursuing a field of intellectual enquiry isolated from society and its interests, and end up not ‘engaging’ at all. Today’s irrational and stultifying climate must be countered by scientists themselves if it is to be overcome.

‘Does the aspiration to eliminate disability through genetic technology necessarily denigrate the disabled as people?’

Duleep Allirajah, disability policy analyst, explained to the uninitiated how, contrary to the medical model, campaigners insist that people are ‘disabled by society not their bodies’. To this end, remedies (rather than treatments or cures) are sought at the level of policy, adapting the built-environment or workplace, and lobbying for anti-discrimination measures.

Josephine Quintavalle, who’s founder of Comment on Reproductive Ethics and is sympathetic to the social model, suggested that society makes value-judgements, which send out the message that ‘we don’t like disability and we’d like to get rid of it’. Looking at how prospective parents are dealt with, Quintaville spoke of the bias in the health system, in that it fails to provide balanced information on the choices available. Her main criticism was that rather than explaining the prognosis and implications for bringing up a disabled child, the health system presumes abortion would be the likeliest option.

Quintavalle clearly believes that the pro-cure camp is eugenicist; she refused to entertain the notion that a woman’s choice to abort is qualitatively different to enforced sterilisation. Rather she stressed that women’s rights with regards to their own bodies are being eroded.

On the contrary, argued a member of the audience, doctors want to eliminate disease and most women want a healthy child; for Allirajah, the impositions of health professionals and counsellors were more likely to compromise parents’ decisions. And anyway, people are more than capable of distinguishing between the decision over whether or not to raise a child with a disability, and the dignity afforded to disabled people. He was critical of the failure of the likes of Quintavalle to do the same. Ironically, he argued, rather than ‘seeing the person behind the disability’, campaigners regard advances in biotechnology as an ‘attack on their very essence’. Surely, this amounts to identification with the disability, to the detriment of the individual. As Allirajah noted, ‘pain, fatigue [and] incontinence’ are not the kind of experiences anyone should want to celebrate.

As if to reinforce this impression, Quintavalle expressed concern that, despite the poor success rate of pre-implantation genetic diagnosis (PGD), sooner or later the technique would be refined. This was not only discriminatory (part of a ‘search and kill’ mindset), but encouraged the notion of the child as commodity. Quintavalle questioned how it is possible on the one hand to be accepting of surplus embryos, and yet on the other, say ‘if I want it, it’s very precious’. This, as a contributor from the floor noted, demonstrated the ‘pro-life’ strand to Quintavalle’s argument.

One audience member pointed out that the debate was only of significance to a small minority of the disabled population anyway. Allirajah agreed, adding that disability is predominantly associated with the ageing process. Ironically, argued another, the young disabled are often more independent than their able-bodied ‘stay at home’ counterparts. The fact that they are no longer incarcerated in long-stay hospitals, as Allirajah put it, and that they have a much greater prominence in public life now, was evidence enough of their much improved position in society.

The attempt by some campaigners to define people with disabilities as a distinct cultural group is mistaken. The arguments presented by Quintavalle are not only demeaning for the disabled, but for society as a whole, reducing what it means to be human, and closing off the potential to overcome the kinds of debilitating conditions they endure.

Dave Clements Limited

I am a writer and consultant with over fifteen years experience working in senior strategic, management, project and engagement roles, and advising local government, the NHS and other public sector and VCS organisations. I am available for commissions.